Wednesday, December 23, 2009

Payton's been in the hospital for a couple of days now and I can't tell you how proud I am of her. She has been so tough and really only had a few meltdowns (which in itself is amazing!). I took her to the doctor concerned she had a bladder infection and before we left the office they were scheduling her for a chest X-ray because of her cough. I wasn't even worried about pneumonia because I didn't think she sounded bad, but turns out she had double pneumonia and ended up in the hospital. Sure enough, once they started the breathing treatments she really started coughing and hacking, so it definitely was a blessing we went to the doctor's appointment and he heard her cough.

Payton has become the greeter and the entertainment of the hospital. No one can walk by her door without her yelling "Hello!" or "Come on in!" and if someone does come in, they get the question "Where's my present?" Yikers :) I was concerned about her getting the breathing treatments because she hates her brother's nebulizer (the noise) but it's so much quieter it hasn't even bothered her. She usually ends up coughing so much she throws up when she's having a treatment, but she's done fantastic with it!

The nurses are shocked how well she can swallow her pills and take her liquid medicine, and usually are so good to her that they receive a "Aahhh, you're so nice" or "you've been good, you're going to get presents!" before they leave the room. She is loving the socializing in this place! She is also loving the warm blankets they can give her at the drop of a hat (instead of having to put it in the dryer like we do at home and wait a bit for it to get warm).

The only time she's really given us any trouble is when she is ofcourse tired at night or when she passed by the physical therapy room and saw all the treadmills. She has quite the obsession with treadmills and she gave us quite a meltdown over it. Eventually, she and Bob went and watched the treadmills for about an hour while other's were having their therapy. Thankfully the nurses allowed her to do that, otherwise I'm not so sure she ever would've calmed down about it until she went to sleep.

Right now she is sleeping peacefully and we're hopeful she'll be checking out tomorrow - just in time for Christmas! However, if not, the nurses have reminded her there is a chimney here and that Santa will find her. Much love to all of you and I hope you all have a very Merry Christmas!

Monday, November 30, 2009

Thanksgiving was a little different this year. We travel about three hours to go see Bob's folks and after about an hour into the trip I decided it just wasn't going to work for Payton this year. For some reason for about six months or so Payton has been terrified of getting lost if we leave Lamar. It seems strange to me that even though she's with Bob and I (and we've never been lost before) that she doesn't trust we will get her there and know how to get back home. She was terrified - had cried and screamed for an hour and was just shaking. She and Koen were sitting in the back seat in their car seats and Koen had reached his hand across that back seat and held her hand for probably around 15 minutes. It's so amazing how he tries to take care of her.

Who knows if Bob and I did the right thing by turning around and meeting my mom to take her back home, but neither of us could stand seeing her terrified for two more hours of driving. My mom said after she got in the truck with her, Payton had her hold her hand all the way back home. It was dark and when the billboard signs would come up on the side of the road Payton would get scared and jump. Then, when they reached Lamar, Payton said "ahhh, Lamar.....did you hear that?" My mom told her she didn't hear anything and Payton said "they all said hi to me." Just from that short conversation Payton had with my mom it's very apparent to me that Payton was relieved to be back in her familiar surroundings, which makes me feel better about the whole situation. I have a call in to her developmental pediatrician to see if there's something he can give her for traveling. Christmas is coming up and ofcourse we don't want her to miss that trip! And, we were really hoping to take the kids to Disneyworld over Payton's spring break this year. However, this may have changed our minds ;) Although, Thanksgiving simply was not the same without her, there are so many things I'm thankful for:

I'm so incredibly thankful we can go to God in prayer for strength and peace that only He can give us and more than anything, I'm thankful for His grace and mercy that I do not deserve.

I'm thankful my children were healthy over Thanksgiving. The WS family has been hit so hard lately with the loss of two beautiful children and several hospitalized. They were all in my thoughts this past weekend.

I'm thankful my parents were willing to watch Payton while we made the trip to see Bob's family. My mom had a big meal to prepare for Friday and it meant a lot to us that she and my dad were willing without hesitation to keep Payton.

I'm thankful for my husband who, no matter what the situation, encourages and supports me.

I'm thankful Koen is so loving to his sister. He really does care about her and may even be more patient with her than Bob and I! :)

And last but not least, I'm thankful for modern medicine. It's amazing how much better Payton feels (and looks!) when her blood pressure is under control. She just glows and has the best belly laughs when she feels good!

I hope you all had a wonderful Thanksgiving and have a very Merry Christmas!

Wednesday, October 28, 2009

Last week was Payton's cardiologist appointment. Bob and I were so anxious to get her in there, concerned about her blood pressure issues, but all turned out very well. The doctor told us this is just part of the monster of williams syndrome and not to ever really expect to get it regulated. Her heart looked really strong (which made us relax instantly!) and basically just said due to the narrowing of vessels in her body, she'll have the bp issues. Right now we're doing the three medications and taking them every 2-3 hours. I am so happy to say that I have not gotten a call from the nurse in over a week (and in the past it was on nearly a daily basis). So, it feels less stressful.

We've since had her IEP meeting. I really can't say enough good things about Payton's special ed teacher and her therapists (and her regular teacher as well!). They work so well with her and in the same breath, care enough for her to get her the best education possible. Their biggest concern with her is upper body strength and fine motor skills. Which I guess is typical of most children with williams syndrome. Her teacher said it just stares them right in the face that she needs to have a ton of OT. They're also concerned with her visual-spatial deficit, but if I understand correctly 'doctor' wise, there's not anything that can correct it. We're just working with her to try and overcome some of it. They have laminated some papers for her to be able to trace over her name (she can write letters, but the size is so off and it's very hard for her to connect lines, etc). They're using the Handwriting Without Tears and the great thing is she is actually enjoying learning.....so really no fits at school.

Probably the biggest issues we've had are our weekends. We've contributed the outrageous behavior to being off of her normal routine of going to school, but we're also thinking some of the behavior may relate to her anxiety to rest time and someone she calls a 'mean girl' in the cafeteria. Payton has hated rest time since day one. Laying down for 20 minutes drives her insane and we all know it's because she's such a busy little bee, she can't sit still. (her spec ed teacher told us she admired us because she is so busy....and in my mind I was thinking - wooh! you should see her on the weekends when she is falling apart!). Anyways, Payton's obsession with laying down and the so called mean girl wasn't affecting her at school. As I've heard from most parents of a child with williams syndrome, Payton keeps it together while at school. However, she lets it all out when she gets home. We probably hear 'the mean girl' about 100 times a night. Add on top of that rest time, when she lays out a blanket and no one in the house is supposed to talk and the lights have to be dim....our house has been full of screaming, yelling, biting, hitting...behavior we hadn't seen in a while and quite honestly had not missed!

It's taken me a while to realize that the resting at home and complaining of bright lights was all attributed to her obsession with rest time. Poor Koen gets whalloped by her if he makes a peep because she thinks he should be quiet because it's rest time (if she had her way we'd all be doing rest time 24 hrs/day). Needless to say, our weekends have been really bad.

However, the school is willing to help us! Amazing to me since they are not having any issues with her at school, we're only having the trouble at home. Anyways, they are pulling her out of rest time so she will no longer rest (she doesn't need to rest anyways) and during those 20 minutes they will give her extra help on her fine motor skills. For the mean girl, they are going to start doing a lunch brunch with her where 2-3 times a week she'll get to have lunch in a quiet room with some of her friends (now as I say friends, they are actually just peers her age. If you ask Payton who her friends are, she will always name off adults, such as her aide or teachers. She will never name someone her age....because obviously she doesn't really play :) The spec ed teacher sat at Payton's table yesterday and asked Payton to tell her a secret....."Is the mean girl in here". At first, Payton said no...then a couple of minutes later, Katie asked her again and sure enough, Payton pointed her out. It is a cafeteria lady that has a loud voice and kind of a snarl on her face. Katie thinks every time the lady yells, Payton thinks she's getting onto her, which she's not. So, hopefully taking her out of the cafeteria a couple of times a week, doing some social stories, etc will help Payton out. (Payton loves to tell me every night that the 'mean girl' put ketchup in her hair, bit off her finger, etc). She's really come up with some good stuff!

The past few months have been quite stressful due to her blood pressure and getting her accustomed to school, but we are getting there and feeling so much better now. I'm proud of how hard she's working and the teachers tell me the other students really enjoy her (*sigh of relief!). More than anything, I'm thankful the school is willing to do what is best for her!

I feel bad - most of my update has been on Payton. Koen is doing wonderful as always! He's still the easiest boy and full of love. Don't know what I'd do without him!! We still call him the calm in our storm :)

Monday, October 5, 2009

Right now I guess it is fair to say our entire house is emotional. I've been so discouraged over Payton's blood pressure. Tonight, I ended up having the on-call nephrologist paged at Children's Mercy to discuss Payton's blood pressure. It was 138/87 and thankfully he said it was way too high and called in an emergency med to get it lowered within an hour. By the time she went to bed it was down to 102/68 and she was exhausted and ready for bed. My heart aches for her. And ofcourse my heart aches for Koen because I feel like so much of our time is spent on the phone with the doctor, insurance, or pharmacy that I am neglecting Koen. Now, if I really step back and look at the full picture, Koen could care less. He's playing, while Bob and I are scurrying around or worried. I'm sure he senses something is going on, but usually he just asks "payton crying" or is escaping from her wrath :) I'm so thankful he's a healthy little boy, cause I'm not sure I could handle two to worry sick over.

Right now I'm at the point of barely functioning at work-I'm too worried about her. We've managed to make it one day (last Friday) without a visit to the nurse and I was hoping for another....but sure enough by 1:30 today she was there complaining of a headache with bp of 138/80. The doc added another med and we'll see how it goes. here's to a better day tomorrow!

Monday, September 21, 2009

Everyone has told me all along that Koen would be sensitive towards Payton and wouldn't you know, it's all ready becoming apparent that he wants to help her. We were getting ready to take Payton's blood pressure and she got anxious about it (it's rare anymore that she gets anxious over it, but every now and then it sneaks up again). Koen ran over to her side and grabbed her hand to hold it while daddy took her blood pressure. She still likes to have someone hold her hand when we take it and Koen has obviously seen us do this. Sure enough, he stepped in quickly to help her out. It absolutely melted my heart.

The other time I noticed it was when she was listening to a lullaby on Bob's iPhone. We always laugh because Payton seems to have a love/hate relationship with a lot of different noises. The noises she hates are the noises she is absolutely obsessed with. Train whistles, lullabies (they make her sad), the air compressor, Koen's nebulizer. She hates these things, but yet insists on find them and listening to them. Once the lullaby came on, she started crying and there goes Koen, running to her side and grabbing her hand to hold it. Beautiful.

Sunday morning Koen decided to go in and play on my treadmill (which he is normally unable to turn on, but unfortunately I did not take the key out of it and he turned it on high). Needless to say his feet flipped out from underneath him and he was pushed against the wall getting burned by the treadmill. He burned the back of his head (not bad, but enough to burn some hair out) and then got quite the burn on his arm. The doc gave us some medicine to put on it along with some bandages and wrap and he's doing really well with it. It sure has left a mark with Payton - everyone has heard about her brother getting burned and I'm sure she's talking about it all day at school. Even last night in the bathtub, Koen did great getting it wet. I just knew it would burn so bad when he got it in the water, but that little guy didn't cry at all. Man, I love that little guy.

Back to Payton.....I was disappointed yesterday at church when I heard some little boys making fun of Payton. I knew she would eventually get made fun of, but I wasn't really prepared for it at this age. The little boy sitting next to Payton laughed and told the boy next to her that Payton couldn't write. Ofcourse they started laughing and making fun of her and Payton really doesn't 'get' that they are laughing at her. So, she joins in the laughter. (and I might add - her laughter is full of so much joy, I love it). However, while she was laughing and clueless that the laughter was at her expense, my heart was breaking. I know all kids get made fun of but it just feels different because she doesn't 'get' it. I'm not ready for this yet. We notice kids staring at her more (I will be the first to admit that she doesn't understand how to play with the kids and does have some quirky behavior......but I so wish they wouldn't stare and give her weird looks).Whew - we are so not ready for this.

*************Just got a call from the school nurse. Payton's got a headache, blood pressure is 130/80. Why does this instantly make me tired and sad? I so want her to feel good.

Sunday, September 6, 2009

You know, we've been at this for nearly six years with Payton, and Bob and I still feel absolutely lost sometimes. The doc increased the most recent medicine again and we think we are seeing some improvement. We do have to take her in for blood work this week some time....but other than that, I am hopefuly this week will be better for her. I can't really think of the last time Payton has felt at her best. Her blood pressure has been on a wild ride lately and it's taken her father and I with it. It's so emotional when your child doesn't feel well and there's not a darn thing you can do about it.

We've been venturing out to ballgames, a place called Kangaroo Gym (where kids can bounce like crazy), etc. and Bob and I are becoming more and more fearful Payton is not going to 'outgrow' the emotions that go along with taking her places that may be more loud or active than what she is used to. She really does want to go to these places, but once there for a bit she really does just lose it and spends a lot of her time crying (or screaming and crying, I should say). At kangaroo gym she discovered the bathroom sink and spent a good thirty minutes continually washing her hands. It was irritating to me - after all - there were tons of kids there having a ball and she should've been doing the same thing. But, again, I've got to remind myself that what makes the other kids happy won't necessarily make her happy.

And, ofcourse, the greatest part of it all was that Payton crashed her first birthday party. At the gym, there was a child having a birthday party and Payton managed to make herself well known to those attending. She talked to all of them and then proceeded to tell them she was very hungry - wouldn't you know it - she ended up with a piece of spiderman cake. A tad embarassing for me, but nothing compared to the embarassment I received at the pizza place afterwards where she proceeded to ask strangers for money because she wanted to play the arcade games at the front of the restaurant. And, yes, one gentleman obliged :) On the way home Bob and I were talking about how frightening it is that Payton sees everyone just the same. No one is a stranger. So scary! She will give anyone a kiss, give anyone a hug, and talk everyone's leg off. While I'm sure she may touch several people's hearts, it scares us to death.

So, those of you with older kiddos......should her emotions be better by now at age six? She is getting stronger and stronger. It is so hard to carry out a screaming, kicking six year old....and I really get tired of the stares. I know so many of them think I need to get my child under control but they have no idea how there is just no winning with her. She just doesn't 'get it'. And Koen-he's the polar opposite. Two years old and he knows how to behave. I'm not saying we have him completely figured out - I know kids change as the grow - but he understands things. Bob and I really are afraid that when Payton is thirty years old we're still going to struggle with her understanding things and not throwing a terrible fit. (I've read stories like that on the listserve and I really don't want it to be like that for Payton). It's awful for Payton and it's exhausting emotionally and physically for Bob and I.

We took Payton to the dentist last week and she'll need to have surgery (which we figured before going in there). With her medical issues they'll have to do it in the OR, which is great with us, it makes us feel better that way. Because she's not in any pain, she doesn't have to have it right away - so we're happy about that. We see the cardiologist in a few months and with the way her blood pressure has been, I'm anxious to go to that one. I know I may not ever get any real answers, but it sure would be nice to :)

Wednesday, August 26, 2009

The first few days with Payton went pretty well at kindergarten, but we've gone downhill every day. She still has such a hard time communicating exactly what's going on, so I usually get bits and pieces and then finally am able to put it all together. Typically when she didnt' want to go to school she would tell me she didn't want to rest (they have a 20minute rest time). I would then explain to her that everyone has to rest and to just lay down quietly until the teacher says she can get up. Well, sometime in the past five days she's told me she tries to go potty during rest time (her way of getting out of it) and the teacher says no going potty during rest time. So last night after her gazillion meltdowns she finally says something about a lullaby. It's then that I realize they are playing soft, slow music during rest time. I don't know about your kiddos - but Payton just sobs when anything like a lullaby, Jesus Loves Me, etc is played. It just makes her so darn sad. So - her way of getting away from it was to try and go potty. Today she went with her big headphones to cover her ears during rest time. Hopefully that will ease her anxiety over rest time. If not, they said they could take her to the special ed class and she could stay in the quiet room for her 20 minutes of rest time. She does make me laugh though because she says rest time is SSOOOOO long.

The other struggle with Payton lately has been leaving the house. She is terrified we will not be able to find our way back. This started around July and has been an issue ever since. When my children were babies it was hard being in a car when they would be crying....just wanting to be held or out of their carseat. Now that Payton is five.....it is exhausting listening to her scream in the car anywhere we go. I've gotten some suggestions from the listserve that I'm going to try with her, but I really did assume that when I would explain that mommy knows how to get home she would not be so anxious over it. Whew!! Anxiety is so delibitating for these kids.

Last night I was more than pleased with Payton on her new blood pressure medicine - she can now swallow a pill! It's a small pill, but so much easier than mashing it up and putting it in applesauce. And-we are seeing results.......this morning it was 105/61!!! I'm much more at ease now :)

Monday, August 24, 2009

Payton's blood pressure has been awful this past weekend, running about 133/80. I can tell just by looking at her that she doesn't feel well. Her eyes get so puffy and she just looks exhausted. I've got a call in to the doctor and the nurse asked me to have the school check her bp and see what it's running there....the school nurse called and it was 128/80. Dr. Blowey's nurse said we may do a 24 hr monitor-which I think would help get an idea what it's doing all day for her. I feel awful sending her to school (when I left she was still crying and not at all happy to be there....) but what do I do? I really don't like sending her to school when her blood pressure is that high, it makes me nervous....not that I could do anything about it, but atleast I'd be with her. Anyways, I just needed to vent a little. I know worrying doesn't do any good....but I can't help it.

UPDATE: Just heard back from Payton's doc.....adding another med (since she's maxed out on the other one), bloodwork and then we'll go from there.

Friday, August 21, 2009

This was posted on the list serve today and I thought it worth putting on my blog. I am sure we've all been questioned on why we do things the way we do and this particular mom wrote an essay to her school to answer that very question. Just yesterday I was talking to my sister about this, but this mom put it in much better words than I ever could.

To make a long story short, earlier this week a question was asked bysome nitwit official as to why there weren't more parents (of specialneeds kids) involved in the local PTA and other issues that have come upthat directly involve our kids. His question, which was passed on to mewas, "Where are the parents?" I went home that night, started thinking -and boy was I pi**ed - and banged this "little" essay out the next dayon my lunch break. By the way, I took copies of this to the school boardmeeting that night, gave it to a couple of influential people and itWILL get around...... .......

Where are the parents?

They are on the phone to doctors and hospitals and fighting withinsurance companies, wading through the red tape in order that theirchild's medical needs can be properly addressed. They are buried under amountain of paperwork and medical bills, trying to make sense of asystem that seems designed to confuse and intimidate all but the verysavvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lifttheir 100 lb. daughter onto the toilet. They are spending an hour ateach meal to feed a child who cannot chew, or laboriously and carefullyfeeding their child through a g-tube. They are administeringmedications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergencyrooms, waiting for tests results to come back and wondering, "Is thisthe time when my child doesn't pull through?" They are sitting patientlyin hospital rooms as their child recovers from yet another surgery tolengthen hamstrings or straighten backs or repair a faulty internalorgan. They are waiting in long lines in county clinics because noinsurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2or 3 hours a night, and must constantly be watched, lest he do himself,or another member of the family, harm. They are sitting at home withtheir child because family and friends are either too intimidated or toounwilling to help with child care and the state agencies that aredesigned to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as theytry to make up for the extra time and effort that is critical to keepingtheir disabled child alive. They are struggling to keep a marriagetogether, because adversity does not always bring you closer. They areworking 2 and sometime 3 jobs in order to keep up with the extraexpenses. And sometimes they are a single parent struggling to do it allby themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helpingthose in need, as long as it doesn't cost them anything. They are tryingto patch their broken dreams together so that they might have some sortof normal life for their children and their families.

Thursday, August 20, 2009

Payton seems to love kindergarten. She doesn't fight me at all to go in the morning and just makes her way to sit in the hallway with the other kids in her class until school starts. I crack up because she looks like such a peanut compared to the other kids her age. BUT - she can definitely stick up for herself if need be :)

The evenings right now are the hardest part for her. She spends a lot of her time being really emotional but I know she is still just trying to process her day. Thanks to my father, she is able to come home after school and just be calm and do her own thing. This gives her time to spend with grandpa and time to just process her day. Thank God for family.

Payton's BP has still been pretty high even since this last increase on medicine. Last night it was 128/80...but I'm trying to be patient with the new routine starting. With the extra stress and anxiety I'm sure it could make it go up. I'm just doing the 'wait and see' right now. However, a couple of nights ago she scared me to death. I had taken her and Koen out on the trampoline to give Bob a little bit of a break (he'd picked Payton up from school and she'd been in meltdown mode for two hours...so he needed some peace!). Anyways, we weren't jumping but for a couple of seconds and she grabbed her head and screamed "what's that?". She'd never said it quite like that and I could tell she was in pain. I grabbed her and had her sit on my lap for a while and Koen continued to jump. After a bit, Payton and I stood up to jump again and Payton grabbed the inside of her upper arm and started complaining of it hurting. That got me concerned so I took the kids inside and took her blood pressure....by this point I was afraid of a stroke or heart attack...you know, all ready to call for an ambulance. Her BP was high, but not abnormally high. So, we sat down and kept an eye on her. I called my mom because I was still worried about it - but her speech was okay and she seemed to be acting okay. I have no idea what caused those pains but it really did scare Bob and I. You know, it's not that I'm 'thankful' for williams syndrome, but I sure do look at things differently than I ever did before.

And Koen.....he is still going to Dawn's and having a ball. He does ask about Payton every day wondering where she is. We tell him she's going to school and he just says "OKAY!" and is out the door with his baseball helmet on (I don't know why but that boy loves wearing a baseball helmet, football helmet, or a baseball cap...he cracks me up).

Tuesday, August 18, 2009

Payton's first day of school was yesterday. I was able to meet her aide (which I've heard wonderful things about) and help her find her desk and locker. She seemed more than happy to be there and was very excited to start her day. As I left the room she was sitting at her desk with her para and yelled "BYE MOMMY!" No tears for either one of us :)

I thought about her all day wondering how in the world she was doing - especially during lunch. Carrying something and not spilling it is still very difficult for her and as anyone with our kiddos knows....eating is still very messy. (Bob and I are amazed how much better Koen can hit his mouth with his silverware than Payton....she covers her face and clothes!) I also worry about her on the playground, but my guess is she will spend the majority of her time in the swing. She loves to swing!

Because I work til 5pm I'm not able to pick her up from school. Bob picked her up yesterday (I can not tell you how worried about her he was yesterday). The kids sit outside their classroom in a big group and when the adult comes to pick them up, they call the child's name and the child comes to them. Unfortunately, when Bob went to pick her up Payton had the spaced off, open mouth look (as my mom says, the look we all see on her when she's in her own world....and get so sad when we see it). It pretty much devastated Bob and he's had a lot of trouble dealing with it. He's been up since 4am this morning worrying about her....funny, I was the nervous one before and now I'm ok and he's worried. I guess it's a good thing we take turns. We know she is being well taken care of, but it's so hard to let her go when you know she really doesn't understand so much yet. Yes, she's five, but really at a three year old level. She needs to be more independent but it is so hard to have her at home and not notice a delay but then take her to school with her peers and see that she's no where near she needs to be. Then, the fear sets in. How can she take care of herself, how can she learn in this atmosphere, can she keep up? Questions in time that I know she will prove to us she can do....it's just tough.

After school she had to go to the dentist. She's lost a majority of one of her back teeth and unfortunately she'll need to have it capped, cleaned out, etc. There's no enamel (from what I hear that's common in ws?). Not looking forward to her being put under for that, but I know she needs to have it fixed.

Tuesday, August 11, 2009

Yesterday we met with Payton's kindergarten teacher and special ed teacher. They gave her a tour of the building and let her see the classrooms....and she seems more than excited about going to school. I know in my heart she's ready to go, but still get so nervous and sick to my stomach when I think about it. I know so many are going to think this is the silliest statement, but I know I would feel more comfortable sending Koen off to school than Payton. There is such a difference....I know Koen can fend for himself and figure things out. Payton did fine in preschool and the amazing thing was, children could already tell she couldn't do everything they could, so they helped her. I know that's what will happen in kindergarten as well. But, she's my baby, and it scares me.

And, I know Payton doesn't understand yet....but the gap is getting wider. It's so hard to see her around other kindergartners......and it really does hurt to know that the heartaches I feel with all of this will never really go away. I have really excellent days/weeks and then for some reason have a difficult time. The past few weeks have been the latter. I'm sure it's just the stress of the school year beginning - worrying about her blood pressure, anxiety, prolapse, all the 'what ifs'. But, worrying doesn't solve any of it. Like Bob said, all we can do is pray for her. One more week and I'll be able to post how it goes!

Thursday, July 30, 2009

Payton's blood pressure has been giving her trouble for the past three weeks, but we've increased it again and hopefully this will do the trick. With this last increase, she's maxed out on this medicine, so I guess if she has any more trouble they'll start her on another medicine. Seems like that is really common in children with ws.

Payton's latest fascination has been Wii Music. Actually, all of us have had a lot of fun with it! Payton gets to direct choirs, bands, play a ton of different instruments, etc. She loves it! And, is actually pretty good at it :)

The other amazing thing Payton has done lately is put her head under water! I can't tell you how much private swimming lessons have helped her this summer. She now holds her head under water for a couple of seconds and Bob and I are beyond shocked. We're so proud of her!

The kids have had a really great summer so far. Koen LOVES jumping on the trampoline and riding his trike and Payton is usually chasing butterflies or trying to catch lightning bugs :) It's so neat because Koen really wants Payton to do everything with him. He can't say 'Payton', so he calls her 'Mimi'. With a little encouraging, Payton will generally end up doing what he asks her (like "mimi, jump?" "mimi, swimming?"). It really feels so good to see them doing things together.

Honestly, Bob and I could not have asked for a better summer. Things have fallen in to place really nicely. And, even when the bumps hit (like the past three weeks with an aggressive, sleepless little girl) we know there is an explanation....something has made her nervous/anxious or her blood pressure is up. Yes, the blood pressure does make me worry what's going on in that little body of hers but I'm so happy for some answers as to why sometimes her behavior is so aggressive. Thankful, thankful, thankful. :)

Wednesday, July 15, 2009

Tractor in hand, football helmet on - can't get any better than this :)

Kiss for Koen :)

Real quick update.....Avery made it through surgery and was sleeping sound yesterday evening. Hopefully her mom was able to get some much needed rest. Claire has her surgery for her aneurysm today - could be a 3-6 hour surgery. So, keep them all in your prayers today.

I've got a call into the nephrologist on Payton's blood pressure - so hoping to hear back from them real soon. Payton has managed to only have one potty accident this week - so we are making headway in the 'accident' department! YAY!! She has gotten a lot of cheering on from us :)

Friday, July 10, 2009

The past two evenings Payton has been very very emotional. Wouldn't you know it - her BP is back up. I imagine an increase in meds is coming her way. Funny how their little bodies adjust so quickly to the medicine, isn't it?

Tuesday, July 7, 2009

The sun has been shining bright on the Littlejohn house lately. We had another fantastic week. Meltdowns after transitions have been few and far between. When she does have one, we ask her to go to her room and she usually goes willingly to get herself calmed down. Bob and I just kind of look at each other like "is this really happening?". I'm so proud of her and how far she's come.

She spent a couple of nights with Bob's folks last weekend and Bob and I were both dreading the few days after her return. Generally they are filled with giants sobs and an inability to cope with anything. This was not the case this time and makes us realize there is a light at the end of the tunnel. Even though we've been told this would happen and she would begin to understand more, it doesn't seem like it will ever happen when you are going thru it.

Once we picked up Payton and Koen after being gone for a couple of nights, I sat in the back seat and watched Payton stare at Bob for nearly an hour and a half trip in the car. Not just a typical stare, but a stare that looked like she hadn't seen Bob for years. She was studying his face and asking him to smile a certain way. I've never seen anything like it. It was almost mysterious, like she was memorizing every freckle, every crease. In articles, I've read about babies with ws....how they look more at faces and really gaze. Payton did that as an infant, but this is the first time I've seen her do it this much lately. She had me mesmerized.

Life is simple at our house. We spend nearly every evening at home - usually outside. Koen is typically riding his little three-wheeler, playing baseball, or swimming while Payton is usually sitting at my side using her daddy's iPhone to listen to different train signals. I sometimes get sad that she's not up and playing with her brother more often, but the sound of train signals for some reason is something that really makes her happy. And it also seems to help her relax - just sitting there doing her own thing. I'm sure some would call us quirky, but we are enjoying our peaceful evenings - even if it does include train bells :)

Sleep actually exists at our house now! Just going on mother's instinct, I believe the major cause of Payton's sleep issues were blood pressure. This past weekend she was complaining of her eyes hurting (which for her, is the clue that her blood pressure is up) and sure enough, her blood pressure was high and her sleep (and behavior) was 'off'. On one hand I am so happy she is feeling better and sleeping better and on the other hand, I feel sad for her that for five years she was miserable and we just couldn't get a good reading to know why. But - I can't think about the past....I'm just so incredibly thankful she feels better now!

Before I sign off here, I just want to ask you to please keep Avery and Michaela in your prayers. Avery is recovering in ICU and Michaela had an MRI last week. I know their families could use all the support and prayers they can get.

Monday, June 29, 2009

Bob and I just finished up possibly the best week of our lives with Payton. The huge meltdowns were few and far between and they only thing we were really dealing with were the repeated episodes of wetting her pants. Even the destruction of my house was kept to a minimum :) I attribute most of this to us being able to be outside nearly every hour of the day playing in the swimming pool. I don't know if I could even put into words how stress-free I felt last week. It felt pretty darn amazing!

After attending my niece's 1 year old birthday party on Saturday, Payton and Koen went home with Bob's mom and dad. They were in much need of some one-on-one time with their grandparents because they just don't get to see them that often. They stayed two nights (we get to pick them up this evening, and the hours cannot go by fast enough for us!). This is the longest they've been away from Bob and I and it's been pretty darn tough. Plus, we honestly have no idea what to do with ourselves! We were able to go out to decorate Kayden's grave in some peace and quiet, which was nice. It doesn't seem like it's been five years ago.....time doesn't even take away the feelings you felt. Going to the grave site always brings the feelings straight back. However, I take much comfort in the fact he is safe in the arms of Jesus.

Saturday after the birthday party, Bob and I went to see the movie My Sister's Keeper. I'd seen an interview with Cameron Diaz and thought it was definitely a movie we needed to watch. Wow-it was a great movie. Some of it was a little to close to home and heart breaking to watch, but still a fantastic movie. In the interview, Cameron Diaz was explaining how this movie is about any family that has a sick child - whether it be a child with cancer, autism, syndrome, etc-it shows how it affects the family. Bob and I both felt like they did a really good job with this movie. The father in the movie stated it best:

"Having a child who is sick is a full time occupation. Sure, we still enjoy the every day happinesses of family life. Big house, great kids. But, beneath the exterior there are cracks, resentments, that threaten the very foundation of our lives. Somehow, the very things that tore us apart would bring us together in ways we would have never imagine."

I won't go into anymore detail on the movie because I don't want to give any of it away. But, it really is an amazing, touching movie. Just take a box of kleenexes :)

Friday, June 26, 2009

Welp, Payton's been potty trained (thru the day) for quite some time now. However for the past three weeks she's had accidents daily. I am AMAZED how often this little peanut has to go to the bathroom. Every fifteen minutes sometimes. Have any of your doctors explained why they have problems with this? Just small bladders? I'm also wondering if it's just the transition from preschool to no preschool....and she's just not transitioning well. Hmmmmm........

Wednesday, June 24, 2009

Koen got his first hair cut this past week. He is losing his baby look and is starting to look like a little boy. I can't believe it! I need to post a video so you all can see his personality. He is the funniest, easy going little man. And-since his second set of tubes, he is really starting to talk more. The other night he ran up to me and said "BIG HUG!" (ofcourse, it was in his deep 'manly' voice) and he wrapped his arms as tight as possible around me and gave me the biggest hug. I've been blessed with two really affectionate kids. I know Koen will probably grow out of that (and be embarassed to be around me!) but I imagine Payton will be affectionate forever :)

The kids have really enjoyed their summer so far. Most of it is spent in the back yard in the baby pool. We put a little tikes slide in the pool and the kids have a blast sliding down into the water. I've been tempted to put Koen in swimming lessons because he really likes the water, but I think I will wait until next year. Payton has only had one lesson (they were cancelled yesterday for the weather) but we have another one tomorrow and I feel really good about them. Being one on one really changed how she handled them.

Bob took Koen to the ENT yesterday to have his ears checked and they look great. He took Payton along because the doc and nurse really enjoy her company....they were thrilled Payton came along with Koen and she got to leave with stickers and suckers as well. That is one doctor that Payton is not afraid of. And, ofcourse, Koen is not afraid of that doc either. Payton's BP also seems to be staying steady right now at about 105/65 so we are more than pleased. Right now, we are really just enjoying our time at home and watching the kids play.

Please keep the Calvert family in your prayers. They lost their 3 year old daughter, Ruby, who had williams syndrome, last week. I can't even put myself in a position to imagine what she is going thru. My heart is aching for their family.

Wednesday, June 17, 2009

Payton had swimming lessons last night and she did fantastic! We decided to try private swimming lessons this year and it was perfect for Payton. The young lady who taught Payton had also taught another little boy with down syndrome, so I thought she would be a good fit. She was so patient and Payton loved every minute of it! After the experience last year - I am thrilled. It's amazing what one year can do :)

Monday, June 15, 2009

I don't know what is wrong with me, but I have been in a funk lately. I have been trying to 'go' a bit more with Payton. For instance, last week I decided I would take the kids to walmart with me. Bob had some much needed yard work to get done and I thought it would give him the opportunity to get it done without little hands trying to help. I still can't figure out why I can not take my child to walmart. I was humiliated - and still when I think about it I get really sick to my stomach. Note to self: Avoid the vaccuum cleaner aisle when with Payton at walmart. We were in the vaccuum aisle for over 20 minutes and when it was time to go - woah. I had a cart full of stuff and she screamed at the top of her lungs for a good ten minutes while I endured the awful glances of the other shoppers. Everytime I placed an item on the table to be checked out she would scream "NO! That's mine!" I still can't believe how ridiculous it was. That's when I feel I need a sign for she and I both to wear on our backs. Just be patient, she's special. Sadly, she and I both walked to the car in tears. (Koen didn't though - yeah!)

This past weekend we went to see Dora Live! Payton loved it - she watched it the entire time with her fingers in her ears (it was noisy!) but she LOVED every second of it. Intermission was tough on her - she cried/screamed thru the whole thing because she thought Dora had left for good. After that, I was concerned about the end of the show, but she did okay with the fact that Dora was off the stage and gone. Leaving the theater was a whole other story. Now that Payton's five and a half years old, it's tough dragging her out of places. She is one strong little girl and even at the zoo it's embarassing to try and carry (or drag) a thirty pound, long legged little girl out.

I feel numb and quite emotional at times. I love Payton so much and she literally brings such happiness and joy to our family but I am so ready for her to show some type of change in the area of meltdown and temper tantrums. I wish so badly she could handle change. Someone with older kiddos chime in here.....is she ever going to realize this behavior is completely inappropriate? Or does she already understand it but just can not control the behavior. She has us stumped....and again, flabbergasted because it is so obvious Koen 'gets it' when he is in trouble. I really want to be able to take her places and not be scared of how she's going to react.

Sunday, June 7, 2009

When I opened the letter from the special education cooperative, this is the first goal I saw. She hasn't achieved this goal, but is still working towards it. I don't know why, it's not a sentence I haven't seen before, but this time it kicked me in the gut. I imagine it's because I had such an incredibly rough weekend with her and seeing that sentence on Saturday evening made me realize the reason the weekend had been so tough is because she lacks in reasoning and logic.

Routine is still very important for Payton. Thursday evening, Bob picked Payton up from Dawn's instead of me. Generally it's me that picks her up and she was 'off' all night long. I couldn't figure it out, but as I was putting her to bed she informed me she was not happy with me. When I asked her why she said "you not pick me up". Then, the whole messed up - full of meltdowns - night made sense. I always find it so strange that it really throws her off when one little thing is different, but when something changes for her, it really messes up her clock or something. I guess it's the anxiety coming out. This is where reasoning and logic comes in. Forget trying to explain something to her - things just don't make sense for her. I'm sure in time it will come to her but it's hard talking to someone who is in a five year old body and see that she can't 'get it'. And it's really strange because if I say the same thing to Koen, he does get it.

The conversation can simply go like this:

Payton: I want to go outside. Koen: outside!Mommy: OK, before we go outside, we have to put our shoes on.Payton: screaming and cryingKoen: OK (and we put his shoes on)Payton: I want to go outside!!!!!! (screaming)Mommy: Ok, Payton, but we have to put your shoes on. Look at bubby, he put his shoes on. Now let's put your shoes on.Payton: Screaming and crying, sometimes laying in the floor, sometimes attacking me. This can go on for atleast 30 minutes and my 2 year old typically waits patiently until we go outside.

Something as simple as putting shoes on - my 2 year old gets it, Payton doesn't.

To make things even better, Bob left on Friday to go and spend some time with his brothers. He came back Saturday evening (and in my opinion, his arrival could not come soon enough). Preceding his arrival, Payton had given me about 2 hours full of just plain screaming. It was becoming very obvious that her ability to cope with things being different was reaching an end and I was about ready to pull my hair out. It's sad because it is always good for us to get away but we always feel guilty leaving the other spouse behind because we know what they're trying to deal with. I know Bob had a good time, but I also know his thoughts are always at home and wondering if everything is going okay. I hate that for him, but again, am hopeful that as time goes on, payton will do better with this. I know it's so hard for people to understand, but this is why we generally stay home in our protected bubble and choose not to deal with the meltdowns. Things are hard enough as it is, but to try and do the 'extras'......it can easily ruin our week or weekend. And, it really just isn't fair to Payton because she just can't settle herself down for some reason.

Tomorrow Koen gets his tubes put back in. We are so excited to get this done. I know it's not a cure all, but he'll feel better and not get so many infections, so it'll be nice. I get to spend the day with him tomorrow and get some one on one time, so I'm excited for that as well. He is such a little cuddle bug :)

Tuesday, May 26, 2009

Saturday, May 23, 2009

One thing I love about having all of the ws family blogs is knowing that we've all got such a connection. Nancy recently wrote a post that I could immediately connect with. (check it out here). I remember as a new mom going thru the exact same things Nancy went thru and being so incredibly exhausted and wondering why in the world I just wasn't cutting it as a mom. Our lives are so much better now because of Payton's ability to communicate....although we still have some really BAD days, I would not ever want to go back to the dark days we used to have.

Payton's summer has started out well. We tried t-ball, but have already quit. The anxiety she had before the game and actually just being able to process it all once she got there was too much for her. She said she just wants to play at home. And, that's fine with me. I have to remind myself a lot that her brain processes things so differently. While Bob, Koen and I might process everything at once, Payton is apt to try to process it all night and into the next day. I'm hoping when she gets older when can find something she's interested in special olympics.

Prolapse seems to be be Payton's biggest issue right now. Unfortunately I pretty much can't leave her alone right now because she loves to run to the bathroom and try to pull out the prolapse - which is hard to see her doing and difficult to make her understand how yucky it is. We went to a family get together this weekend and while everyone spent most of their time outside, Payton and I spent our time inside. She still prefers to do things by herself most of the time and doesn't really enjoy playing much. She just likes to do her own thing. Therefore, I just stay inside with her because I know what she's capable of if left alone for more than a few seconds :) Sometimes I wonder why Payton and I even go when we're spending a majority of the time in a different area than everyone else, but I have to consider it an improvement because in the past we usually didn't even attempt to go because she couldn't handle it. She can now, and that feels really good.

Koen just started another antibiotic for his ears and we are on a countdown to get his tubes put back in. It'll be nice for him to get that done. He gets pretty fussy but I really can't complain. Considering how he feels, he's still a pretty darn good little boy. He cracks me up because Payton has recently started having me cut every tag out of all of her clothings. She HATES tags (this is a new aversion) and guess who else immediately grabs his tag when I put his shirt on. Yep - you guessed it! Koen. He grabs a hold of the tag and says "ow, ow, ow" until we cut it out. I love how he watches her and wants to be like her. (don't like it with the meltdowns and tantrums....but I do believe we are getting that under control with him - even at the age of two I think he is able to see that she just can't control it). When we leave some where and she has to say goodbye to someone and is ofcourse screaming and crying, he just sits in the car and looks at me, like "here she goes again". I love that little man and already feel like I'm sensing some compassion in him. Oh, how I pray he has compassion.

Tuesday, May 19, 2009

The first night....not so great. But, we're sticking with it. The first twenty minutes she was very very upset...crying pretty hard (and for those who know her, LOUD!). Her teammates were patting her on the back and encouraging her, which is so cute when they're five and six years old :) She got calmed down and spent the next 20 minutes sitting in the bleachers just watching the game. Bob and I get tickled because everyone seems to know Payton and most of them we don't know....we just laugh and say "who was that?" and thankfully they were all rooting for her. Becuase of all the encouragement and attention, she put herself out on the field for the last twenty minutes and hung in there! Now, you never know where you may see her (for instance, she likes to just walk up to the batters and tell them 'hello' instead of staying out in the field to try and catch the ball) and she also likes to just walk up to her teammates in the field and strike up a conversation...so she's all over the place. It really felt good to hear everyone encouraging her and cheering her on when she finally got out there. I think everyone was proud of her - and I think the next game, she might just start out playing with no meltdown. If not, that's ok. She did it, and that's all I can ask for.

Monday, May 18, 2009

We had a really good weekend. The weather couldn't have been nicer and the kids played so well together on Saturday evening. Typically the kids don't play together - Koen enjoys toys and Payton really doesn't 'play'. So, to see them running and laughing and playing together really did our hearts good! There's nothing better than hearing children laugh.

I recently made my blog private, for a couple of reasons. One reason was because I use this blog as an outlet and if there's ever a time I feel the need to vent about anything going on at the school, I wanted to be free to do that and not take the chance of someone from the school system reading it and then taking it out on Payton or being frustrated with Bob and I. The other reason was because after seeing and reading several things on pedophiles and trying to go with the 'expert' advice, I didn't want my children's pictures to possibly be open to just anyone, but because some family and friends were having trouble getting logged in I've made it public again. I definitely want our family and friends to be able to read the blog because I think it helps them understand Payton more and keep up with everything that is going on with the kids.....

Payton has her first t-ball game tonight and she seems to be excited about it. The practices haven't gone the best, a lot of the time she ends up just sitting with me and I'm okay with that. My guess is she will do differently in the game because as she says "people will clap for me!" and she enjoys people cheering her on. We're excited to see how she does but certainly do not have our hopes up.

Wednesday I take her back to the nephrologist in KC and am actually looking forward to this appointment. I'm sure she will not cooperate with them, but it's been over a month since we've seen this doctor and it will be nice to get some more information from him instead of just talking to the nurse over the phone (who can not for the life of her keep Payton and Abi straight!).

Koen just got off of his antibiotic and right now we're just floating thru til he gets his tubes fixed in June. They've switched his allergy/asthma medicine and I can see a difference in him. I feel bad/guilty saying it, but I find it so much easier to deal with his allergies and asthma than I do all of Payton's issues. I feel so blessed to have him healthy and happy - and running around like a mad man. He is so much fun and really very easy going. He LOVES being outside and playing with anything that involves a ball. Actually, he sleeps with two baseballs at night (one in each hand). And, if he wakes up, he darn better be able to find them or he's not a happy camper. I love it! It's kind of crazy because I feel like I've had two 'first' children....Payton was my first child, obviously, but now Koen feels like a first child because I am seeing what it's like to raise a typical child. It is absolutely nothing short of amazing. He understands what I'm saying (sometimes even better than Payton)! Although there is a three year age difference, the gap is shrinking very quickly and many times Bob and I feel like we have twins (except that we feel Koen has surpassed Payton with his ability to control his emotions, Payton can still cry for hours and many times if she is disciplined, the day is pretty much shot - which stinks!). It's a work in process, and a tough one at that.

Sleep has been incredible this past week. Payton even slept two nights straight thru (woah!) and Koen does amazingly well when he doesn't have his ear infections. Bob and my frame of mind changes so much when we get a good night's sleep. It's amazing what it does for our family. I pray these restful nights continue and thank God for sleep. For so long I was afraid to go to sleep because I really was afraid that I would not wake up (we were so sleep deprived it felt like we were going to die!) but this week that has not been the case. What a blessing!!!

Thursday, May 14, 2009

Wednesday, May 13, 2009

Payton's graduation went great! I'll have a video to put on here later, but for now I've got a couple of pics. She was the usual ham and had a great time. She can really put on a show when it comes to music - she gets so excited she can't contain herself. I love it!

I got so tickled at her because when they announced what each child wanted to be when they grow up, the typical answer was "a ballerina" or "a vet" or "a fireman"....but not Payton! As would be typical ws, she told a story :) She wants to be a fireman who rides in the truck, sprays water out of the house, and helps people in the fire". Let me be the first to say I was shocked at how descriptive she was.....and wondering where in the world she got the idea of a fireman. Must be the obsession with the fire alarm or something. Anyways, I'm so proud of how well she did with all the people there. She's such a joy to watch.

Monday, May 11, 2009

Today was our transition meeting for sending Payton on to kindergarten. There wasn't really any suprises and I really think Payton is going to enjoy kindergarten. It's already very apparent to the therapists and her teachers that noises are Payton's biggest enemy - what she's most afraid of, what keeps her so easily distracted, etc. They've taken notes and are going to watch her carefully in the lunch room, restroom, hallways, etc - anywhere there is extra noise. Everyone has figured out that once she has an issue with a noise (sees a vacuum cleaner, etc) the day is pretty much shot because she won't be able to think about anything else. Although I hate it for Payton, it is nice to know that she's not just doing it to me....cause like Bob says - sometimes it feels like people just don't believe us.

I feel nervous and excited all rolled into one. It's three months away, but I still worry about the little things. But, being the social bug that she is - she will LOVE being with everyone. The thing that shocked me the most is that her teacher said it is not unusual for Payton to hit other children (which, I understand most kids do go thru a phase of hitting.....Payton's just never stopped). They said she's never hit a teacher (thankfully - because she can sure smack me when she gets mad), but she will hit other students when they have something she wants or they get in her way. I think that's where the inability to control herself comes in. She knows better, but really can't stop herself.

Another thing the therapists mentioned is how often Payton goes to the bathroom. They wanted her kindergarten teacher to know that while she may ask every 10 minutes to go to the bathroom, she actually does have to go. She's not trying to get out of doing something. Which, again, I'm thankful they pass the information on because I can see how it would look like she's trying to just leave the classroom for a break.

Anyways, to make a long story short, after meeting with the special ed teacher, the secretary, and the principal, I feel good about her starting school. Tomorrow evening is preschool graduation. Payton cannot wait because everyone is going to clap for her! She was up from 12am-5am this morning talking about it (a little bit obsessive, heh?) but I can take that any day over crying. So-I'm just going to be excited with her! I'll be sure and post some pics!

Tuesday, April 28, 2009

I'm out of town on a business trip this week and Bob just sent me these pics of the kids. Man, I miss them so much!!! Only a day and a half more and I'm back home with them....I can NOT wait. Bob said the kids seem to be doing just fine with me being gone - and Payton is getting to spend the night at my mom's (there's no way Bob could take care of both at night....because if Payton gets up, one of us usually needs to be with Koen because Payton screams loud enough it scares Koen to death). So, I think at bedtime Payton is enjoying some time with grandma and Koen is enjoying some one on one with Daddy.

Koen has an appointment with the ENT on Thursday. His ear has been draining and he's running a fever thru the night. I'm guessing we'll need to get that tube put back in. Easy little surgery, though, so I definitely will not complain.

I've not been home to take Payton's BP and haven't asked Bob about it - so I wouldn't worry about it while I was gone....so far it doesn't look like the increase has done much for her. Sadly, my BP is lower than Payton's. She goes back to KC the middle of May, so it will be nice to see the doc face to face instead of trying to talk over the phone.

That's all that is going on here! Last weekend we went to my nephew's ball tournament (which he got 1st place!) and had a great time. Payton pretty much greeted everyone there, smacked some strangers on the butt (yeah, that was great), and made herself at home. She had a blast! Koen enjoyed it too - he loves anything that has a 'ball' in it....I have a feeling he will look up to Tanner. I'm so excited for the weather to stay warm so the kids can be outside.....the evenings go so much smoother when we can get outside!

Friday, April 17, 2009

I'm not sure why, but Bob and I both have been having a really difficult time lately. There's so many things we're struggling with lately. One big issue is how in the world to teach our two year old son that because he sees Payton behaving a certain way does not mean it's the correct way to act or react. I know everyone says to raise your special needs child the same as you would your typical child. I get that. The problem is, Payton has absolutley no self control.

Last night we took Payton to her first t-ball practice. Bob and I were both excited and even Payton was excited. The ball field she practiced on is pretty much right next to the train tracks. Payton is obsessed with trains, but when it's that close, the noise can be way too much for her. The first train came by and Bob was out on the field with her and was able to grab her and cover her ears, so that went ok. I get tickled at Payton because she has no focus, so it is very typical of her to just wander off and do her own thing. I expected that, and she did wander, but Bob was able to redirect her back to the field. For a good ten minutes (quite an accomplishment in our world!). After that ten minutes, Payton ran over to me and decided she was going to go play in the park (she was using the excuse of needing to go potty, but because she still doesn't quite know how to cover her tracks she blurted out she wanted to go play in the park). I explained to her that we were here to play t-ball and she would not be going to the park. So, she stiffens her arms down and screams at the top of her lungs. Embarassing, of course, but even much more so when my two year old son decides he will mimic her and return the scream and stiffen himself. He wants to be just like Payton (what little brother doesn't?) but that is unfortunately bringing a lot of bad behavior from him. He sees her meltdowns, feels the stress in the home, I feel sad for him having to see/feel all of this. I know when he's older I will be able to explain more of this to him, but for now, he see it and thinks it is okay to follow exactly what she is doing.

I ended up taking Koen home and leaving Bob to try and keep Payton focused. I guess in the next five minutes another train came by and Bob said that topped her off and she was in complete meltdown mode. He explained to the coach's wife that she had williams syndrome and that we would try one more practice and see how it goes but that these meltdowns are really not unusual for her. The coach's wife was extremely nice about it, but I feel once again sad over this. I think I get my hopes up thinking this is going to be an opportunity for us to be able to get involved, meet other parents, etc and the fact is it's just not going to happen this way. We feel alienated again. I'm sure this seems so selfish, but I just want to see her able to make friends, able to cope, able to control herself, and able to participate in things.

At work I hear my co-workers talking about taking their family places, going out to eat, taking their kids to movies, etc and I want that so badly for my family. Payton is getting better, but it is still hard to go places because we have to wonder any time we take her if she's going to melt down....and once she hits it, you can't pull her out (as you all know). Is it ok if Payton doesn't play t-ball? Absolutely. But it still feels like it's just another time that we've tried something, had our hopes up, and are again just stuck at home.

I don't know why Bob and I are having such a tough time right now - it may be the mix of frustration over her behavior and that we're still struggling getting her blood pressure under control (yesterday it was 140/80)....but for some reason, we're having trouble coping. The doctor yesterday did increase her anxiety medicine and in the next week we'll look at increasing her blood pressure medicine again. I think we want people to tell us this is going to get easier, but I am guessing it's just different milestones/experiences that you miss as they get older that really bring you to your knees?

Wednesday, April 15, 2009

Things have been kind of a blur around here lately - neither of the kids have been sleeping well and it was getting to the point Bob and I weren't sure what to do with Koen. We KNOW he can sleep, but he's been getting up around every 30 -45 minutes. So, off to the doctor we went. Double ear infection - with one of his tubes still in his ear, but dislodged and not doing any good. We should've known, because like I said, he can sleep good if he feels good. So - not sure if he'll have to have that little procedure done again. We're waiting to see if he starts up his frequent ear infections again and if so, we'll get the tube fixed. Suprisingly, Payton ended up with an ear infection too (it'd been a while since she had one), but her tubes were still in place and the antibiotic cleared it right up.

We're still messing with Payton's blood pressure trying to get the right dosage. Yesterday was a very good day for her and it was encouraging to think we may have just hit the right dose. We'll see how the next two weeks go and then we'll know for sure.

The kids had a really good Easter. Payton and I had to sit outside of the church service because it was so loud, but Bob really enjoyed it. Payton is still enjoying hiding easter eggs and going on egg hunts. Koen picked up on it really fast about finding those eggs. Payton's also started enjoying playing UNO. We don't follow the game exactly, but I figure it's good for her with the colors and numbers and trying to follow directions. She's picked up on it really well and loves it when all of her cards are gone and she wins!

Tomorrow I take Payton to KC to the doctor. I'm looking forward to getting some extra time with her, even if it is going to the doctor. I really can't put into words how completely different Payton is when her blood pressure is in the normal range (typically in the morning). As Bob says, she's just a princess.

Monday, April 13, 2009

Tuesday, April 7, 2009

One thing is for sure, Bob and I have noticed a direct correlation between Payton's blood pressure and her behavior. When her blood pressure is lower she is definitely a calm little girl. This tends to be in the morning after she's taken her first dose of bp meds. Sure enough when her blood pressure goes up, she becomes angry and almost monstrous.

It feels fantastic to know and feel why all along she has been such a temperamental little girl. I've always tried to be patient with her, feeling that so much of her behavior issues were anxiety (and I still believe a lot of it was) but to add the blood pressure on top of it really created a lot of problems for her behavior wise. Even Bob said he looks at her behavior and outbursts different now because he knows it's her blood pressure. I'm just guessing here, but I imagine the celexa probably brought her blood pressure down some when she started it because it relieved her anxiety.

One thing I am struggling with is knowing that she more than likely has had high blood pressure since birth. Because of her sensory issues and nonstop crying, we were never able to get a reading on her. Her heart has had to work harder because of the high blood pressure and caused her to have an enlarged heart. It breaks our hearts to know that she really wasn't feeling well and we just didn't know it. Payton's gone to bed the past two nights at 7:30 and is just exhausted. She has been complaining of headaches and grabbing her head screaming, which still terrifies me. Tomorrow I call the doctor again to talk about increasing it again to see if we can get it down some. It's still running about 127/81 for now. It will seem really strange if we get it to the 90/50 range!

Monday, March 30, 2009

The past few weeks I've started to notice Payton enjoying music. She's always liked music - but now, she asks to listen to music and absolutely enjoys it. And-I'm loving it! At church yesterday they had a bluegrass band that played and sang songs. Payton clapped, smiled, and sang to her hearts content. She doesn't really sing on key yet, but she's getting there!

This weekend we went to Payton's cousin's birthday party. Faith turns six in a couple of days and it was a Hannah Montana party. They ofcourse had music playing and Payton got to dance, jump around, etc. She LOVED it. There was a girl there who was about to turn three and Payton really enjoyed playing with her. I've noticed that Payton seems to really get along with children who are around three years of age - seems to be around her developmental level I guess? It seems her delays are between 18 month to two years, so it was nice to see Payton playing with her.

It was a three hour trip to get to Faith's house - and Payton did fairly well with the drive. However, she is suprisingly still TERRIFIED of windshield wipers. I used to try and schedule our trips around rain. As a matter of fact, if rain was in the forecast, we'd pretty much cancel our trip. She had started to do better with the windshield wipers, but for some reason this little fear popped back up (ofcourse, it's been a while since we've had a good rain!). That poor little girl screamed and shook (and ofcourse that terrified Koen), but we were able to stop and buy some Rain-X and fix the problem....although everyone's nerves in the car gets jostled pretty quickly when you have someone that scared. When we pulled into the driveway when we got home Payton said "Thank you daddy for not using the windshield wipers. No more windshield wipers." This is a HUGE step up for her. In the past, we would've traveled the entire way with screaming, shaking, and crying because she would not be able to get over the anxiety of the windshield wipers possibly being used. This time, she could comprehend that we bought the Rain-X and daddy would not have to use the wipers at all. Although it seems like a small step, it was HUGE for us. I'm so thankful for every improvement we see in receptive hearing!

Wednesday, March 25, 2009

I heard back from the nephrologist today and they are going to try another increase in Payton's BP med. Slowly but surely I'm sure we'll figure out the right dose for her. I know it is a path you all have walked before, it just makes me worry until we have everything figured out. Thanks for everyone's support and prayers. It really means a lot to me.

Tuesday, March 24, 2009

The school called today. Payton's been complaining of headaches. It's either her eyes hurt or her head hurts. I don't really know how to describe how I feel....helpless, tired, emotional, sad. They took her to the nurse and her bp was high. You know - if I could keep her with me every second of the day and shelter her and protect her, I would. Although I am at the point that I'm ready to make some more changes in our life for her. Right now, we're waiting until we feel exactly where God is leading us.

Bob had a car accident today. He was on the interstate. The truck looks awful and I feel so incredibly thankful that he's still with us! Shoot, he didn't even have to go to the hospital. His neck hurts, but that's about it. I'm sure tomorrow and the next day he'll be pretty sore. Honestly - I'm not sure how in the world I could juggle everything with Payton without him.

Here's some new pics of my little man - although he's not so little anymore! He's quickly catching up to Payton! :)

Monday, March 23, 2009

Friday, March 20, 2009

Payton's blood pressure has me stumped. I know they said it would take a full two weeks before knowing whether the dosage increase has helped it go down, but it's still running around 125/75-really not far from the 135/80 they don't want it reaching. When I started having blood pressure problems, all they had to give me was a water pill and it worked wonders for me (I'm sure mine was just stress related though). I really never thought we'd have any trouble getting her blood pressure to go down....it has me stumped and makes me nervous.

Wednesday, March 18, 2009

Last night Payton slept great. She hasn't slept but maybe a couple of hours a night since last Thursday. The whole train ride got her out of whack....but she did fantastic last night. And, I immediately notice a difference in my 'frame of mind' once I get some good sleep.

Yesterday, Payton went to the ENT. She positioned herself directly in front of the door as people walked in and managed to make herself the greeter. Anyone who walked in the door was greeted with a "Hello!" or "Hi, my name's Payton!" or of course "This is my mom!". Once we got back there, the nurse said to her "Payton, you do know you're my favorite, don't you?". She told her that the last time we were there and I'm always shocked at that. Payton can be a charmer, but usually at doctor appointments she screams bloody murder. However, at this office, she loves it cause all they have to do is look in her ears so she is relaxed and just happy to be there.

This morning she had to have three shots. She suprised me and did pretty well with those. Once they were done, my mom took her to her favorite place to eat (Denny's) and she rounded the morning off with her grilled cheese sandwich (which is what she would like to eat for every meal).

It's spring break week. The weather has been PERFECT and we got some sleep last night. Can't ask for more than that!

Monday, March 16, 2009

The kids had such a great time on Saturday. Payton did FANTASTIC. The only thing lost was sleep (if her routine changes or she is anxious, sleep is usually what is affected most). We're all still recovering from that, ofcourse, but the greatest thing was that her behavior wasn't affected. Generally in the past, her behavior becomes awful when her routine has changed or she is anxious. It was wonderful this time......and made us think we might try taking her to "Dora, Live" this summer. Not only does she love Dora - but my son does too......so I think they both would have a ball. Here's some pics from our little train ride. I think pretty much every one on the train 'had' to speak to Payton. She loved saying "Hi Conductor!" and insisted on showing everyone her ticket that got her on the train. She continues to make me come out of my shell :)